Some of you (ok, hopefully most who know me personally) probably know where this post is going to head. For those readers who don't already know, yesterday (Sept 1st) saw me united in matrimony with the man I plan to spend the rest of my life with. As you can imagine there were thrilling moments of excitement as we realized the night before we'd forgotten to purchase flowers, and definite struggles against panic when the pop for the punch turned out to be diet instead of regular. There were also quiet moments of reflection when the auditorium was cleared except for the groom, and the bride was presented to him for a private moment of pre-ceremony solitude. The guests obediently filed quietly in line afterwards to wish the young couple well, and as is often the case there were kind comments of the beauty of the decorations and the taste of the cake (both of which were true and well-deserved to the decorators and cake maker), but what was not seen, at least not by most, was the struggle leading up to it all battling not only the ordinary details that every bride inevitably faces (if she doesn't have the good sense to elope *wink*), but also the challenge of adding fibro to an already difficult and often overwhelming task.
Many people get caught up in the flowers, the colours, the decorations, the ribbons, the dresses, shoes, etc. But fibro has a way of making so many of those things seem very unimportant, and to be quite honest, much of it is just that - unimportant. But what I appreciate about the past few months' battle for dominance between wedding and fibro, is that the things that were important about that day, proved their worth, even after all the hassles and stress and tiring details and crunch time. The message of Christ and His church was worth fighting to present with gusto. We had the opportunity to let the beginning of our marriage preach Christ with words, as we hope to continue doing on a daily basis with our actions and attitudes toward each other. It has been a joyful process to look forward to the walk down the aisle, but it has also been a painful one, and fibro has been part of that the whole way. I wouldn't have chosen to have fibro, and many nights I became frustrated at the lack of preparation I could do for the wedding due to exhaustion and pain. But I can look back at the wedding, and the massive amount of help received from all sides, and I can praise God for providing loving family and friends to step in and just do things I didn't have the strength and time to do. I can praise God for how things turned out, because I know without a doubt that it was not possible in my own strength, and finally I can praise God that I am married to the man He has given me and we never have to go through planning a wedding again. :) The End (for now).
I must admit there have been numerous times the past year-ish, when I have either said or at least thought this exact sentence. Sitting on the couch wrapped in a blanket, staring at a computer screen at 8 o'clock at night and wishing there was time for a nap before bed has left me wishing on many occasions that it would "get better." It sounds ridiculous to even put into words, but it's there. All it takes is one or two really bad days physically, emotionally, spiritually...and I am right back to the point of hopelessness--wondering, desperately hoping against hope that somewhere down the line it gets better, but not quite finding the resolve and strength to believe it will. Last night was just such a night for me. After a day that was perfectly good and uplifting, the night-time hours brought my spirits low and when the pain levels refused to cooperate in unusual proportions I found myself at the end of another night reaching my limit on despair and spiritual doubt. It is frightening to let yourself reach a point where you question God's character, but it is terrifying to know how incredibly outrageously wrong and untrue it is and yet still find yourself drifting there time after time. It is frustrating beyond belief. What is it about chronic pain that I find so hard to reconcile with the character of my God? Do I really believe that God is good when I am in pain? Am I so easily distracted from believing truth? Do I treasure God and hold my health in an open hand? Or have I so badly reversed what should be that I am holding my belief in God's character with an open hand while treasuring my health and comfort more than that...? Sometimes it seems difficult to say. In between the mountaintops of joyful acceptance and the valleys of hopeless despair there are a lot of days of mundane walking. Sometimes hitting a bump or pothole, but mostly just trudging, to be honest. I think that is one aspect of fibro that I find the most unsettling. I can embrace the moments of joyful acceptance. I can handle brief interludes of wrestling with despair to get back to a more accurate view of God, but the aspect that is most prone to debilitate my faith is the persistent trudging required. There are long days that turn into weeks and months where I can avoid hitting rock-bottom by keeping busy or focusing on other things, but there is also no joyful acceptance or embracing of God's purpose in this fibromyalgia. There is simply going on because I have to. There is a sense of avoiding the elephant in the room, and hoping that nobody notices. It is these stretches of time that really test and push faith to prove itself. Do I believe God is good when I can't feel it? Do I know God well enough to trust Him when it doesn't fit into my view of what should happen? It is these times when I have to force myself to face reality, but also to embrace what God is doing through it. Avoiding the truth is not the same as accepting it, and trusting God with the circumstances is not the same as pretending they aren't there. If we are to navigate through our lives with grace, we must face what scares us, and face what we don't want to think about, and face it realizing that our God is not cruel or purposeless in His actions. He gives us these things for a reason and He expects us to bring them to Him again and again and again. He will always be more capable and willing to hold them than we are.
Sometimes it's hard to be open about weaknesses. We all have things that we feel insecure about in ourselves, and it's difficult to be willing to be open about those things. It's the topic we try to hide from our families, our friends, and even ourselves at times. It is that topic that draws out our most strenuous knee-jerk reactions against discovery at all costs. Most people do not enjoy having their weaknesses pointed out to them or to those around them. This is one reason fibromyalgia can be so hard to share with those around you. At its core, fibromyalgia feels like weakness--weakness of mind, of body, of emotion, of soul, etc. At times fibro is referred to as ultra-sensitivity, but I believe a rather accurate label is found in the word "weakness." What compounds the difficulty is that there is no physical sign of weakness. It is not as though people can see marks or physical degeneration, so it can be tempting to believe that it is all in your head. Some doctors even still promote this line of thinking. All in all, it is a very difficult topic to bring up and/or to be transparent about with others, particularly those around you who love you. This is the case for this reason among others.
So, why an entire blog post about transparency? In a sense this entire blog is on the need for more transparency and is, in fact, an attempt to promote that from both sides. Being transparent about weakness requires a safe environment in which to share that with others. If other people treat you as if you are making it up, or exaggerating, or even act so over-the-top in their sympathy that it's worse than having it ignored, it's difficult to know how to respond. In a similar way, I have been told it is also difficult to live with someone in chronic pain, exhaustion, and mental fog and somehow know how to respond as well without resorting to the "I need to fix you" stage.
So here we reach the "transparency conundrum," because obviously it is vitally important to have someone there to help deal with what is going on, but it is equally important that they are not bogged down in your problems. When you are just starting this process it can be hard to understand how much to share, what to share, and when to share. Eventually a compromise system has to come info effect, but it will look different for different people.
Bottom line: It is incredibly harder than you probably realize to work through finding how to be biblically transparent in fibro or any condition that involves chronic pain.If you find yourself in a situation of living around it or even living with, remember that the person, who is somebody you care about, is dealing with a lot and a major stigma against it from the outside world. Be willing to share your struggle through it. More so, if you are living with someone who finds it difficult to share, take the initiative to find a way to know what's going on. This process can be messy and difficult, but it is not impossible. Put in the work, and you will be glad you did.
For those of you who found this blog post by searching for those words and were hoping for lyrics to the song "Great Is Thy Faithfulness" .....sorry. :) For everyone else, these words have been echoing in my mind the last two days. Yesterday was a difficult one physically, and I literally woke up praying for this. "God, please just give me strength to get through this day, and hope to face it again tomorrow..." I am not usually one who can pray as soon as I wake up, unless you count waking up over a cup of asian instant coffee about 9am at the office. When I first open my eyes, I have no desire to face the world or any perspective on who God is. I usually take a few minutes to accept the fact that we're starting back at square one on another day and then work my way up to actually standing up and beginning the day. This phrase though, is a fitting one because it perfectly encapsulates the frame of mind I have to get in when I am trying to find the words for what I need. I don't need ready-made answers, cliches, super human abilities, or a good self-help book. I need enough strength to make it through the day (read strength here as: grace) and Hope that tomorrow I will get up again and it will still be worth it because of Who God is. Sometimes it's hard to ask people to pray for physical stuff. I don't like revealing areas of weakness or always being honest about how things are going, and sometimes I don't really even know what to ask for them to pray for. Well, this is a good place to start. If you want to know what I can guarantee would be a fitting prayer request everyday, this is it. Pray that God would give as much as strength as He sees fit, which will inevitably be enough to make it through and that He would keep our Hope clearly in focus so that whatever comes up, it is conquerable and overcomeable because He has conquered and because He has overcome it.
It's hard to decide how to start this. I've inwardly debated writing anything for nearly a year now, much less dedicating an entire blog to it. However, this is something that is not going away, and I feel this is what God has given me to do, so I must stop delaying and get to it. I have fibromyalgia. I have probably had it for a very long time, possibly as far back as I can remember, but I have only been diagnosed with it since last July. The symptoms vary based on the individual person, but there are common ones that appear with nearly everyone. Mine, in particular, seem to center on chronic headaches, general overwhelming fatigue, painful joints, muscle weakness, mental fog, a frequently unhappy stomach, and some intermittent mood swings. I faced a lot of those symptoms during my time at Northland, but being a busy, tired, stressed college student, I blew it off as general college fatigue. I still took as many classes as I could fit into my schedule, worked as many security hours, and committed to an extension church about an hour from campus. It made sense at the time to be so tired, and I didn't question it. Then I went to Asia for a couple semesters and with yet another crazy set of circumstances. Yet again the headaches and fatigue were completely understandable, but upon coming home and sleeping full nights for months on end and still walking around completely exhausted and in pain, I started realizing there was something wrong on a deeper level that a full night of sleep wasn't going to fix. I started researching on my own online and came across a condition known as Fibromyalgia. I had always categorized it with conditions associated with elderly people based on the commercials I'd seen on tv, but when I started reading symptoms and common traits of it, I began to see how very familiar it all sounded. I was afraid to call it that, but I started becoming convinced that fibro was what I had. Finally, on July 4th of 2012 I had a severe migraine that ended with me insisting my parents take me to the ER for some kind of relief. That finally convinced me I needed to have a serious sitdown conversation with a doctor, so I scheduled an appointment and after many blood tests and a few more appointments with my doctor, as well as a consultation with a Rheumatologist, I was diagnosed with fibromyalgia officially. That is the story of how I came to associate this "new normalcy" with fibro. It has been simplified for length and audience consideration (nobody really wants to hear every boring detail from along the way), but that's the gist of it. It is my intention and hope for this blog that it will be a voice for not only raising awareness about fibromyalgia, but also an encouragement and reminder for anyone with a chronic, life-altering condition that there is a purpose in it. God is not less interested in using you, nor is He less powerful to work in it through you. To me fibro without God would mean no hope. No hope of a purpose-filled life, no hope for the future, no hope of any kind of healing, no hope of making an impact on anything, no hope of the resurrection--no hope. Granted, life without God already has no hope, but fibro steals away any tendency to just enjoy life and ignore the tough questions. One of the worst parts of having fibro is constantly questioning in the dark corners of your mind whether or not life is worth the painful process of going through each day-waiting for it to knock you down again. It is not something that is easy to face on a regular basis, but it is also something that would seem impossible to face at all, if not for the hope that the Gospel brings. Each day is possible to start again because I know that God has planned it with me in mind as a part of it, and that plan right now involves fibro. Each day has a chance of being painful, but it also brings an opportunity to be used by Him for His purposes, and that is a beautiful thought. Life is not easy for anyone, and having fibro does not give you special license to drift through life moaning about the pain. Having fibro is a special opportunity to glorify God through specific struggle. I am not writing this blog in hopes of creating some new resource for recipes or miracle cures that might help. The web is full of other places and forums for that sort of resource. I am also not writing this to create a support group for people to air their complaints about pain, doctors, prescription medications, or the like. There are also many resources for that online. What I am attempting to do is share a genuine (and sometimes not so pretty) picture of this journey that God has called me to, which right now is greatly involved in figuring out how to best deal with fibro. Somedays it all makes sense and I accept it completely, and other days it is like walking through fog, hoping the ground is still there to catch your each step because you can no longer see it for yourself. Both in the sunny and foggier days, the Truth remains, and I hope to share it both with you as reader, and with myself when I can't seem to remember it (another symptom). Thank you for caring enough to read this incredibly long first post, I doubt they will all be this long. Periodically throughout the blog I will attempt to share what I need prayer in the most, and how to be encouraging the people in your life who are dealing with pain on a daily basis. It feels a bit awkward to ask for prayer in such a public forum, but God has been working in me to the end that I realize I am not more spiritual in His eyes for hiding and covering up weaknesses. Sometimes the best gauge of strength is knowing when to let someone else take up the fight on your behalf. It is my hope and prayer that this blog is encouraging and useful to my fellow brothers and sisters in Christ. May it be used by Him for the further growth and strengthening of His Body. g&p -ktg-